Nemaline Myopathy, Congenital

Nemaline Myopathy, Congenital

Self Help Clearinghouse

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Nemaline Myopathy Support Group

International network. Founded 1999. Grassroots group that networks families affected by pediatric/adult Nemaline Myopathy for support and information. Pen pals, literature, phone support, information and referrals available through several Yahoo e-groups targeting age groups and English, Spanish and German speaking families. Nemaline Myopathy conventions organized to meet researchers and other families.

Write:

Nemaline Myopathy Support Group

c/o 5 Cairnbank Gardens

Penicuik

Midothian, EH26 9EA UK

Website: http://www.nemaline.org

E-mail: davidmcd_@hotmail.com

Verified: 1/8/2013

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